Informed consent for organ donation?

By Seema Shah

In my last post, I discussed my view that brain death is not the same as death, but is a status legal fiction to allow organ donation when it is legally and ethically acceptable to treat individuals as dead. There are some important and unresolved questions in the debate on brain death and organ transplantation. In particular, does the public know the truth about brain death? If not, is it ethically acceptable to rely on the consent given by organ donors and their families? Although several surveys have been done on public attitudes towards brain death and organ transplantation, there is a compelling need for more and better data to determine what members of the informed public believe about the relationship between brain death, death, and vital organ transplantation.

Michael Nair-Collins wrote an interesting article recently in the Kennedy Institute of Ethics Journal entitled “Brain death, paternalism, and the language of ‘death.’” He argues that the lack of transparency in obtaining consent for organ donation calls into question whether donors and their family members give valid consent. For instance, he notes that the Department of Health and Human Services website states the following: “Patients who are brain dead have no brain activity and cannot breathe on their own. Brain death is not coma. Brain death is death.” Yet we know that brain dead individuals do continue to have some brain activity, including the secretion of vasopressin, and as discussed in my last post, there is good reason to distinguish brain death from a more traditional, biological conception of death. Nair-Collins raises important concerns about policy makers failing to inform the public with accurate information about brain death in order to try to increase rates of organ transplantation.

What Nair-Collins fails to acknowledge is that by focusing on the information about organ transplantation that policy-makers, doctors, clerks at the DMV, and all those involved in getting consent from potential organ donors, he is only looking at one piece of the puzzle.  Those who have family members who are brain dead have direct access to evidence about what brain death means. They can see for themselves that, with assistance from modern technology, brain dead individuals are warm to the touch, have hearts that beat, lungs that inflate, and in some cases, even have bodies capable of passing through puberty or gestating growing fetuses. No matter what family members are told about brain death, they have the ability to perceive with their own senses the difference between brain death and the conventional image of a dead person as a lifeless corpse. Many members of the public may also be able to see that although brain dead individuals are not actually dead, they are “as good as dead” for the purposes of organ transplantation. Read More

Thinking about brain death

By Seema Shah

It astonishes me how many people do not realize the controversial nature of “brain death” and the fact that it is not the same as death. There is a substantial body of literature showing that brain death is not the equivalent of death. The President’s Council on Bioethics issued a white paper in 2008 acknowledging the deficiencies with our current approaches to determining death. The literature on the topic is fascinating—some brain dead individuals have gestated babies successfully to viability and gone through puberty. Many brain dead individuals can heal wounds, regulate their body temperatures, and persist on ventilators for many years. (If you are unfamiliar with this literature and want to read further, see the citations provided below.)

Frank Miller and I have argued that best the way to think about the status quo is that brain death is a status legal fiction, much like the legal construct that a corporation is a person. A corporation is similar enough to a person that it is convenient to treat corporations as persons under the law, rather than writing an entirely new body of law meant to apply to corporations alone. We have argued that brain death is similar to death—Frank Miller and Bob Truog express this by saying that a person who is brain dead is “as good as dead.” For this reason, we can ethically and legally treat the two states in the same way for the purposes of determining death and allowing vital organ transplantation.

There are many open and interesting questions about brain death that I will be exploring on this blog for the next few weeks. Michael Nair-Collins has a recent article in the Kennedy Institute of Ethics Journal that argues that the current approach to determining death in the U.S. is paternalistic and, presumably, unjustified. He cites as evidence the kinds of information that are shared with people deciding whether to become organ donors. But is this true, or is there evidence that the public is able to distinguish between brain death and death? Kenneth Kasper, Frank Miller, and I are investigating this at the moment, and we are finding some surprising answers in the literature. Read More

Introducing Guest Blogger Seema Shah

Seema Shah is a faculty member in the Department of Bioethics in the NIH Clinical Center with a joint appointment in the Division of AIDS.  Her research focuses on the ethics of international research, the ethics of research with children, and the intersection of law and bioethics.  She currently serves as a consultant for the Division of AIDS on its clinical sciences review committee and as an ethics consultant for the Clinical Center.  She has published in the field of bioethics in peer-reviewed journals such as the Journal of the American Medical Association, the American Journal of Bioethics, and the Lancet.  More recently, she has focused on controversies surrounding the determination of death and organ transplantation, with an article on the topic in the American Journal of Law and Medicine.

Ms. Shah earned her bachelor’s and juris doctor degrees from Stanford University.  She previously served as a federal law clerk in the Eastern District of California and a predoctoral fellow in the NIH Department of Bioethics.  She has lectured on the ethics of human subjects research at conferences run by PRIM&R, ASBH, ASTMH, and internationally in such locations as Mali, South Africa, Singapore, and Vietnam.

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